This is where it gets real

You know that feeling when you get on one of those death-defying roller coasters and they ratchet you up the first hill and you wonder what the hell you were thinking getting on this thing and then they pause you at the top of the hill before dropping you to your death and you think “I’ve made a huge mistake” but you know that a) the chances of death are actually very low and b) it’ll be over in a minute and a half anyway?  That’s kind of how I’m feeling right now on the eve of Connor’s first bone marrow transplant hospital stay.  Only a) the chances of death are quite a bit higher for Connor than if he were on a roller coaster and b) it won’t be over for six months or more.

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OK, this isn’t a huge mistake.  It’s our only good option.

Connor goes in tomorrow.  He’ll start the day with surgery to put in a PICC line (threaded out his shoulder to the back to make it harder for him to pull it out) and a feeding tube, then he’ll start his first dose of Campath, a chemo drug that will work to kill off the bone marrow he has so that he can get the new stuff. He’ll be in for three (maybe four) days this time, then home for a week or so, then back in for the long stay starting January 19.

His bone marrow donor is an unrelated donor.  Brian, Claire and I were all tested and none of us matched, but we were very fortunate to find a perfect match in the donor database.  All we know about this donor is that she’s a 24 year old female with O+ blood (which means Connor will get a slightly new blood type from all of this–currently he’s O-).

We’ve spent the last two months gearing up for this.  Connor saw a psychologist weekly to help him get used to the idea of having something attached to his body.  Honestly, this has been our biggest concern.  He hates having anything attached to him, so he removes band-aids, pulls out his own IV if not watched like a hawk, and shucks of his clothing at the first opportunity.  Having both a PICC line and a feeding tube in for months is going to be really hard on all of us.  His visits with the psychologist didn’t do much good, except to prepare the staff at Hopkins for what they might face.  At the start, Connor would put up with having a fake feeding tube attached and covered up for five or ten minutes.  By the final visit last week it was more like five or ten SECONDS before he’d claw it off.  This doesn’t bode well for tomorrow. I keep saying that we’ll deal with it by just dealing with it.  It’s really the only way to handle some of Connor’s behavioral issues.

The week before Christmas Connor had his whole body tested.  He had 11 appointments over four days to test his hearing, heart, lung function, and general health.  He had 12 vials of blood taken, bone marrow extracted, teeth cleaned, two CT scans and a PET scan.  The radiologist looked him over to make plans for radiation. He learned that the CT scan person keeps a stash of Teddy Grahams for her patients and that Santa travels by helicopter to visit sick kids.

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Two days before Christmas Connor had his final IV gammaglobulin infusion.  It’ll be weird not having that as part of our normal life in the future, and I have to admit that I’m going to miss Joan, his nurse who came to us every four weeks for the past ten years (even meeting us when we were on vacation one year because Connor was due for his infusion that week!) and knows Connor at least as well as many of his relatives.  Connor went out with a bang–he was so fed up with medical procedures at that point that he fought the IV harder than he ever has and I ended up with a black eye.

Last week we had a final physical, signed so many consent forms that I think I might own another house now, and fought Connor down to swab his nostrils to make sure he’s not going into this with any viruses.

And now we just wait, poised here at the top of the hill for the downward plunge that begins at 8:00 tomorrow morning.

3 thoughts on “This is where it gets real

  1. Prayer changes our lives. May all the angels surround your family with their love and healing gifts. Bill & I will be praying constantly for guidance for the medical team, patience for extended family, and that your family feels the love and concern of our family and many others. Peace be with you.

  2. I’m coming at this late. Praying that everything went well and thank you for including me on the roller coaster ride(I know I’m really just watching).

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